Tuesday, September 16, 2008

TOP STORY > >When a disease strikes kids

Nemo, Chemo and Fighter. Those are the names that 3-year-old Grace Gwin of Cabot gave her pet fish – a gift from her parents because they love her – and because she is so brave.

Since being diagnosed with leukemia in June, Grace has endured 22 chemotherapy treatments, 20 spinal taps, countless blood tests and transfusions, and many a night in the hospital.

Grace’s parents, Autumn and Robert Gwin, have told her there is “mean stuff” in her blood.

“When she goes to the doctor, she knows what’s coming, she knows the drill, but she hardly complains,” says Autumn.

Grace understands that the “pokies” she is enduring are going to make her well, so she can play at the park and community pool again, go with her parents and little sister, Emily, to church and restaurants, and get back to her happy life as it was before everything changed on the day of her three-year wellness checkup, just after her birthday.

Her parents’ concerns about bruises on her legs prompted a blood test, which found a white cell count about 10 times what is normal.

So, instead of the promised birthday trip to Chuck E. Cheese after the doctor’s appointment, the family headed straight to Arkansas Children’s Hospital.

The next day came the confirmed diagnosis that Grace had acute lymphoblastic leukemia, one of the most common forms of childhood leukemia, but thankfully, one with a high rate for not only remission, but a lasting cure.

That day, Grace became one of 12,500 children in the U.S. diagnosed each year with cancer. Saturday was National Childhood Cancer Awareness Day, and September is the month dedicated to raising awareness about childhood cancer so that it becomes a national policy issue.

The Gwins want others to know about the disease and be sensitive to the fact that so many children are affected.

“Personally, I never had thought much about it – never do you think it could happen to you and your family,” Robert said.

“When they told me, I pretty much wanted to fall on the floor. I wanted to take it and have it be me, not her,” Autumn said. “It gives you a whole different outlook on life.”

Now that cancer is a personal reality, when the young couple hears of someone else with cancer, it touches them personally.

“You know those little buckets in the restaurants … before, I’d just put in pennies, nickels, and dimes, and not give it a second look,” Autumn said. “Now I want to put in a hundred-dollar bill if I could.”

Many things they once took for granted are now more deeply cherished – simple times together as a family, especially family outings.

Those activities are on hold until Grace’s chemotherapy is finished in January, when her immune system will again be strong enough to ward off infections.

But with the ordeal have come many blessings too. A strong faith in God, as well as family, friends, church members, and strangers, have helped them handle each day as it comes.

Aid has come in many ways – donations to Grace’s medical fund, babysitting for 1 year-old Emily, preparing meals, a church bake sale (and a garage sale is planned), and donated leave time from Robert’s fellow employees at the U.S. Court in Little Rock.

Even total strangers working for the court system in other parts of the country donated leave hours so he could be with his little girl at critical times.

Having just relocated from Oklahoma in December for the new job as a probation officer, he had not yet accrued much leave time.

Autumn and Robert are glad, too, for Caring Bridge, a free Web site service that helps connect loved ones of someone with a serious illness or injury. It works something like a blog or online journal.

On Grace’s personalized Web page is a gallery of photos and entries composed by Autumn about Grace’s latest treatment, how she is doing, the setbacks and victories.

The service makes it easy for Autumn to keep friends and family up-to-date with automatic notices to subscribers that a new journal entry has been posted.

They can then log onto the site www.caringbridge.org/visit/gracegwin to read it.

Autumn tells her daughter’s story with courage and faith, thanking God for each step forward, and reporting difficulties matter-of-factly and with the optimism that each difficulty is but a “bump in the road,” as she puts it.

Apparently, there have been plenty of bumps in the road, although Grace is now in remission.

“Everything she has done, there have been complications to it – side effects for everything,” Autumn recounted.

The latest, and perhaps worst, of the complications was pancreatitis, a rare side effect from one of the chemotherapies.

The illness put Grace in the hospital for 11 days and required a morphine drip to manage the pain. She just got back home a week ago.

She is happy, cheerful and playful, quick to hop up to bring out her “beads of courage” to share with a visitor.

Each bead on two long strands represents a particular milestone on the difficult path to healing she has been compelled to take.

Each bead she clearly earned – the silver and black ones for pokes, the white for each day of chemo, blue for clinic visits, light green for tests and scans, yellow for each day in the hospital, lime for fever episodes, and now, purple ones for the morphine drip.

As she proudly displays her beads, she seems like any other happy child.

The telltale bruises on her legs would be easy to overlook, if one did not know their significance. And her parents seem like any other young couple, with two beautiful children, just living life, if you did not know their story.